WHAT NOW?

At first, many parents feel overwhelmed with the technical, as well as the emotional, challenges that come with a high-risk newborn.

Parents in this story advise: First, make sure you get all the education you need to work with special equipment. This learning should take place before you take the child home from the hospital. Don't leave without it, and make sure you have 24-hour phone numbers for all the relevant equipment companies.

Then comes "real life": setting up routines, perhaps returning to work and caring for other children. You may feel alone with your problems, but don't be afraid to make contact with people and agencies who can help. Also keep in mind the words of Benjamin Spock, America's legendary pediatrician: "Trust yourself. You know more than you think you do."

Adrianne Gayman

Hospital Social Workers
Almost all neonatal intensive care units have medical social workers who know the local, state and federal resources and regulations. These specialists can often intercede in difficult matters with insurance companies or other agencies, and sometimes even with relatives! You can see the hospital's medical social worker even if you've already gone home.

Early Intervention Programs
The Individuals With Disabilities Education Act (IDEA), among its many other provisions, requires all states to set up early intervention programs to help children between birth and 3 years to achieve their maximum potential. Look in your local telephone directory in the state government pages, under health, education or children's services.

Another good source, which gives resources by state, is the National Information Center for Children and Youth with Disabilities in Washington: (800) 695-0285
www.nichcy.org
nichcy@aed.org

Travel Related to Medical Care
Traveling to another city for medical care isn't uncommon with a seriously ill child. Needless to say, it can get very expensive. Two sources of assistance with travel and accommodations are:

Northwest Airlines KidCares
(612) 726-4206
www.nwa.com/corpinfo; click on Northwest AirCares
and then on KidCares

Ronald McDonald House Charities
(630) 623-7048
www.rmhc.com

Hospice Care
Hospice care means keeping someone who has a terminal illness comfortable, regardless of age. The emphasis is on care, not cure, and care can be delivered either in or out of your home. Social workers, your local Yellow Pages and the Internet can help you locate resources in your area.
Or try Children's Hospice International at:
(703) 684-0330
www.chionline.org
chiorg@aol.com

Fixing Insurance Troubles
If you need to appeal a decision by your insurance company, you can do so through your state's Department of Insurance. State legislators, even the governor, may also respond to inquiries about trouble with an insurance company or government-based financial help.

Help with many questions about care for your high-risk infant is available from your MDA health care services coordinator or your MDA clinic physician. Also check with your pediatrician or pediatric nurse practitioner, licensed pharmacists, and local librarian. The latter can help you find information on just about anything.